Patients’ perceptions of early palliative oncology care: A qualitative analysis.

138 Background: Early palliative care referral is encouraged for patients with advanced cancer. However, little is known about patients’ perceptions of the impact and relevance of early referral. We conducted a qualitative study in which patients with advanced cancer were interviewed following completion of a randomized controlled trial comparing early palliative care with standard oncology care. Our aim was to delineate what, in the opinion of patients, were the respective roles of the oncology and palliative care teams in an outpatient setting. Methods: We conducted qualitative interviews with patients following completion of a cluster randomised controlled trial of early versus routine palliative care referral. Participants were recruited from 24 medical oncology clinics at a comprehensive cancer center. Selective sampling was employed to ensure equivalent numbers of participants from intervention vs. control arms, male vs. female, age ≥60 vs. <60 years, with high vs. low self-reported quality of life, and with high vs. low satisfaction with care. Forty-eight patients (26 intervention and 22 control) with advanced lung, breast, gynecological, gastrointestinal and genitourinary cancers completed interviews lasting 25 to 90 minutes. Control patients were asked about the role of oncology; intervention patients were asked about both teams. Interviews were recorded, transcribed and analysed using NVivo. A grounded theory approach was used to explore emerging themes. Results: Several themes emerged in relation to the contrast between oncology (OC) and palliative care (PC) including (1) the focus of the consultation, with OC tending to focus on cancer or treatment options while PC was regarded as being more holistic, including physical, psychological and family domains; (2) the model of care delivery, with OC described as being clinician-led and time-limited, in contrast with PC where time was more flexible and the patient set the agenda; and (3) the complementary nature of early palliative care alongside standard oncology care in terms of overall well-being. Conclusions: From a patient perspective, palliative care and medical oncology have distinct and complementary roles, supporting the relevance of early referral.

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Patients’ perceptions of early palliative oncology care: A qualitative analysis.

Journal of Clinical Oncology ◽

10.1200/jco.2013.31.15_suppl.e20639 ◽

2013 ◽

Vol 31 (15_suppl) ◽

pp. e20639-e20639

Author(s):

Breffni Hannon ◽

Nadia Swami ◽

Monika Krzyzanowska ◽

Natasha B. Leighl ◽

Amit M. Oza ◽

...

Keyword(s):

Palliative Care ◽

Advanced Cancer ◽

Medical Oncology ◽

Controlled Trial ◽

Comprehensive Cancer Center ◽

Theory Approach ◽

Early Referral ◽

Early Palliative Care ◽

Oncology Care ◽

The Impact

e20639 Background: Early palliative care referral is encouraged for patients with advanced cancer. However, little is known about patients’ perceptions of the impact and relevance of early referral. We conducted a qualitative study in which patients with advanced cancer were interviewed following completion of a randomized controlled trial comparing early palliative care with standard oncology care. Our aim was to delineate what, in the opinion of patients, were the respective roles of the oncology and palliative care teams in an outpatient setting. Methods: We conducted qualitative interviews with patients following completion of a cluster randomised controlled trial of early versus routine palliative care referral. Participants were recruited from 24 medical oncology clinics at a comprehensive cancer center. Selective sampling was employed to ensure equivalent numbers of participants from intervention vs. control arms, male vs. female, age ≥60 vs. <60 years, with high vs. low self-reported quality of life, and with high vs. low satisfaction with care. Forty-eight patients (26 intervention and 22 control) with advanced lung, breast, gynecological, gastrointestinal and genitourinary cancers completed interviews lasting 25 to 90 minutes. Control patients were asked about the role of oncology; intervention patients were asked about both teams. Interviews were recorded, transcribed and analysed using NVivo. A grounded theory approach was used to explore emerging themes. Results: Several themes emerged in relation to the contrast between oncology (OC) and palliative care (PC) including (1) the focus of the consultation, with OC tending to focus on cancer or treatment options while PC was regarded as being more holistic, including physical, psychological and family domains; (2) the model of care delivery, with OC described as being clinician-led and time-limited, in contrast with PC where time was more flexible and the patient set the agenda; and (3) the complementary nature of early palliative care alongside standard oncology care in terms of overall well-being. Conclusions: From a patient perspective, palliative care and medical oncology have distinct and complementary roles, supporting the relevance of early referral.

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Early Palliative Care for Patients with Advanced Cancer (DRAFT)

10.1093/med/9780190658618.003.0002 ◽

2018 ◽

Author(s):

David Hui

Keyword(s):

Palliative Care ◽

Advanced Cancer ◽

Controlled Trial ◽

Symptom Burden ◽

Early Palliative Care ◽

Key Points ◽

Oncology Care ◽

Cluster Randomized ◽

Study Intervention

This chapter discusses the Zimmermann trial, a large partially blinded, cluster randomized controlled trial of routine oncology care with or without early routine referral to palliative care. This landmark study found that early palliative care involvement was associated with improved quality of life, symptom burden and satisfaction among patients with advanced cancer. This chapter describes the basics of the study, including funding, year study began, year study was published, study location, who was studied, who was excluded, how many patients, study design, study intervention, follow-up, endpoints, results, and criticism and limitations. The chapter briefly reviews other relevant studies and information, gives a summary and discusses implications, and concludes with a relevant clinical case to illustrate some key points around palliative care referral.

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Patients’ and caregivers’ views on the timing and benefits of early palliative care: A qualitative study.

Journal of Clinical Oncology ◽

10.1200/jco.2013.31.31_suppl.157 ◽

2013 ◽

Vol 31 (31_suppl) ◽

pp. 157-157

Author(s):

Breffni Hannon ◽

Nadia Swami ◽

Ashley Pope ◽

Natasha B. Leighl ◽

Monika K. Krzyzanowska ◽

...

Keyword(s):

Quality Of Life ◽

Palliative Care ◽

Controlled Trial ◽

Symptom Control ◽

Safety Net ◽

Satisfaction With Care ◽

Theory Approach ◽

Early Referral ◽

Early Palliative Care

157 Background: Early palliative care referral can improve quality of life and satisfaction with care, and is increasingly encouraged. However, little is known about patients’ and caregivers’ attitudes towards early referral. We conducted qualitative interviews seeking the opinions of advanced cancer patients (who had been randomized to an early palliative care intervention) and their caregivers, to determine whether they perceived a benefit, and if so in which domains. Methods: We recruited participants from medical oncology clinics at a comprehensive cancer centre, following completion of a randomized controlled trial comparing early palliative care referral with standard oncology care. Selective sampling was employed to ensure equivalent numbers of participants based on study arm, age, gender, high vs. low quality of life scores, and high vs. low satisfaction with care. A grounded theory approach was used to explore emerging themes. Results: Twenty-six patients and 14 caregivers completed interviews. Several benefits of early referral were noted. These included: prompt attention to symptom needs; timely, sensitive information about prognosis and end-of-life care options; and destigmatization of palliative care through routine referral. Although some participants did not feel they currently needed palliative care, they did feel comforted that early referral had provided them with a “safety net” that could quickly be put into place if they required future support. Conclusions: Early referral was perceived as useful in several domains, including immediate symptom control, and preparation for the future.

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A cluster randomized controlled trial comparing Virtual Learning Collaborative and Technical Assistance strategies to implement an early palliative care program for patients with advanced cancer and their caregivers: a study protocol

Implementation Science ◽

10.1186/s13012-021-01086-3 ◽

2021 ◽

Vol 16 (1) ◽

Author(s):

Lisa Zubkoff ◽

Kathleen Doyle Lyons ◽

J. Nicholas Dionne-Odom ◽

Gregory Hagley ◽

Maria Pisu ◽

...

Keyword(s):

Palliative Care ◽

Advanced Cancer ◽

Technical Assistance ◽

Controlled Trial ◽

Implementation Strategies ◽

Care Program ◽

Early Palliative Care ◽

Randomized Controlled ◽

Community Oncology ◽

Cluster Randomized

Abstract Background Virtual Learning Collaboratives (VLC), learning communities focused on a common purpose, are used frequently in healthcare settings to implement best practices. Yet, there is limited research testing the effectiveness of this approach compared to other implementation strategies. This study evaluates the effectiveness of a VLC compared to Technical Assistance (TA) among community oncology practices implementing ENABLE (Educate, Nurture, Advise, Before Life Ends), an evidence-based, early palliative care telehealth, psycho-educational intervention for patients with newly diagnosed advanced cancer and their caregivers. Methods Using Reach, Effectiveness, Adoption, Implementation, Maintenance (RE-AIM) and Proctor’s Implementation Outcomes Frameworks, this two-arm hybrid type-III cluster-randomized controlled trial (RCT) will compare two implementation strategies, VLC versus TA, among the 48 National Cancer Institute Community Oncology Research Program (NCORP) practice clusters that have not historically provided palliative care to all patients with advanced cancer. Three cohorts of practice clusters will be randomized to the study arms. Each practice cluster will recruit 15–27 patients and a family caregiver to participate in ENABLE. The primary study outcome is ENABLE uptake (patient level), i.e., the proportion of eligible patients who complete the ENABLE program (receive a palliative care assessment and complete the six ENABLE sessions over 12 weeks). The secondary outcome is overall program implementation (practice cluster level), as measured by the General Organizational Index at baseline, 6, and 12 months. Exploratory aims assess patient and caregiver mood and quality of life outcomes at baseline, 12, and 24 weeks. Practice cluster randomization will seek to keep the proportion of rural practices, practice sizes, and minority patients seen within each practice balanced across the two study arms. Discussion This study will advance the field of implementation science by evaluating VLC effectiveness, a commonly used but understudied, implementation strategy. The study will advance the field of palliative care by building the capacity and infrastructure to implement an early palliative care program in community oncology practices. Trial registration Clinicaltrials.gov. NCT04062552; Pre-results. Registered: August 20, 2019. https://clinicaltrials.gov/ct2/show/NCT04062552?term=NCT04062552&draw=2&rank=1

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Understanding and Addressing the Role of Coping in Palliative Care for Patients With Advanced Cancer

Journal of Clinical Oncology ◽

10.1200/jco.19.00013 ◽

2020 ◽

Vol 38 (9) ◽

pp. 915-925 ◽

Cited By ~ 6

Author(s):

Joseph A. Greer ◽

Allison J. Applebaum ◽

Juliet C. Jacobsen ◽

Jennifer S. Temel ◽

Vicki A. Jackson

Keyword(s):

Palliative Care ◽

Coping Strategies ◽

Advanced Cancer ◽

Physical Symptoms ◽

Early Palliative Care ◽

Beneficial Effects ◽

Symptoms Of Depression ◽

Home Based ◽

Oncology Care

Advanced cancer, with its considerable physical symptoms and psychosocial burdens, represents an existential threat and major stressor to patients and their caregivers. In response to such stress, patients and their caregivers use a variety of strategies to manage the disease and related symptoms, such as problem-focused, emotion-focused, meaning-focused, and spiritual/religious coping. The use of such coping strategies is associated with multiple outcomes, including quality of life, symptoms of depression and anxiety, illness understanding, and end-of-life care. Accumulating data demonstrate that early palliative care, integrated with oncology care, not only improves these key outcomes but also enhances coping in patients with advanced cancer. In addition, trials of home-based palliative care interventions have shown promise for improving the ways that patients and family caregivers cope together and manage problems as a dyad. In this article, we describe the nature and correlates of coping in this population, highlight the role of palliative care to promote effective coping strategies in patients and caregivers, and review evidence supporting the beneficial effects of palliative care on patient coping as well as the mechanisms by which improved coping is associated with better outcomes. We conclude with a discussion of the limitations of the state of science, future directions, and best practices on the basis of available evidence.

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Care plus study: a multi-site implementation of early palliative care in routine practice to improve health outcomes and reduce hospital admissions for people with advanced cancer: a study protocol

BMC Health Services Research ◽

10.1186/s12913-021-06476-3 ◽

2021 ◽

Vol 21 (1) ◽

Author(s):

Jennifer Philip ◽

Roslyn Le Gautier ◽

Anna Collins ◽

Anna K. Nowak ◽

Brian Le ◽

...

Keyword(s):

Palliative Care ◽

Health Service ◽

Usual Care ◽

Advanced Cancer ◽

Service Use ◽

Practice Change ◽

Routine Practice ◽

Early Palliative Care ◽

Before And After ◽

The Impact

Abstract Background Current international consensus is that ‘early’ referral to palliative care services improves cancer patient and family carer outcomes. In practice, however, these referrals are not routine. An approach which directly addresses identified barriers to early integration of palliative care is required. This protocol details a trial of a standardized model of early palliative care (Care Plus) introduced at key defined, disease-specific times or transition points in the illness for people with cancer. Introduced as a ‘whole of system’ practice change for identified advanced cancers, the key outcomes of interest are population health service use change. The aims of the study are to examine the effect of Care Plus implementation on (1) acute hospitalisation days in the last 3 months of life; (2) timeliness of access to palliative care; (3) quality and (4) costs of end of life care; and (5) the acceptability of services for people with advanced cancer. Methods Multi-site stepped wedge implementation trial testing usual care (control) versus Care Plus (practice change). The design stipulates ‘control’ periods when usual care is observed, and the process of implementing Care Plus which includes phases of planning, engagement, practice change and evaluation. During the practice change phase, all patients with targeted advanced cancers reaching the transition point will, by default, receive Care Plus. Health service utilization and unit costs before and after implementation will be collated from hospital records, and state and national health service administrative datasets. Qualitative data from patients, consumers and clinicians before and after practice change will be gathered through interviews and focus groups. Discussion The study outcomes will detail the impact and acceptability of the standardized integration of palliative care as a practice change, including recommendations for ongoing sustainability and broader implementation. Trial registration Australian New Zealand Clinical Trials Registry ACTRN 12619001703190. Registered 04 December 2019.

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Early palliative care and quality of dying and death in patients with advanced cancer

BMJ Supportive & Palliative Care ◽

10.1136/bmjspcare-2021-002893 ◽

2021 ◽

pp. bmjspcare-2021-002893

Author(s):

Kenneth Mah ◽

Brittany Chow ◽

Nadia Swami ◽

Ashley Pope ◽

Anne Rydall ◽

...

Keyword(s):

Quality Of Life ◽

Palliative Care ◽

Advanced Cancer ◽

Randomised Trial ◽

Mean Difference ◽

Cluster Randomised Trial ◽

Early Palliative Care ◽

Quality Of Dying ◽

The Impact

ObjectiveEarly palliative care (EPC) in the outpatient setting improves quality of life for patients with advanced cancer, but its impact on quality of dying and death (QODD) and on quality of life at the end of life (QOL-EOL) has not been examined. Our study investigated the impact of EPC on patients’ QODD and QOL-EOL and the moderating role of receiving inpatient or home palliative care.MethodBereaved family caregivers who had provided care for patients participating in a cluster-randomised trial of EPC completed a validated QODD scale and indicated whether patients had received additional home palliative care or care in an inpatient palliative care unit (PCU). We examined the effects of EPC, inpatient or home palliative care, and their interactions on the QODD total score and on QOL-EOL (last 7 days of life).ResultsA total of 157 caregivers participated. Receipt of EPC showed no association with QODD total score. However, when additional palliative care was included in the model, intervention patients demonstrated better QOL-EOL than controls (p=0.02). Further, the intervention by PCU interaction was significant (p=0.02): those receiving both EPC and palliative care in a PCU had better QOL-EOL than those receiving only palliative care in a PCU (mean difference=27.10, p=0.002) or only EPC (mean difference=20.59, p=0.02).ConclusionAlthough there was no association with QODD, EPC was associated with improved QOL-EOL, particularly for those who also received inpatient care in a PCU. This suggests a long-term benefit from early interdisciplinary palliative care on care throughout the illness.Trial registration numberClinicalTrials.gov Registry (#NCT01248624).

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Benefits of Early Palliative Care to Informal Family Caregivers (DRAFT)

10.1093/med/9780190658618.003.0004 ◽

2018 ◽

Author(s):

Emily J. Martin ◽

Eric J. Roeland

Keyword(s):

Palliative Care ◽

Early Intervention ◽

Controlled Trial ◽

Early Palliative Care ◽

Caregiver Quality ◽

Delayed Group ◽

Stress Burden ◽

Study Intervention ◽

The Impact

This chapter summarizes the Dionne-Odom et al. randomized controlled trial evaluating the benefits of an early, nurse-led palliative care intervention to caregivers of patients with advanced cancer. The study examined the impact of early (at diagnosis) versus delayed (12 weeks later) intervention on caregiver quality of life, depressed mood, and burden. The study showed that early intervention caregivers had lower depression scores at three months compared to the delayed group caregivers. Terminal decline analyses also showed lower depression and stress burden scores in the caregivers who received the early intervention. This chapter describes the basics of the study, including funding, year study began, year study was published, study location, who was studied, who was excluded, how many patients, study design, study intervention, follow-up, endpoints, results, and criticism and limitations. The chapter briefly reviews other relevant studies and information, gives a summary and discusses implications, and concludes with a clinical case.

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Single early palliative care intervention added to usual oncology care for patients with advanced cancer: A randomized controlled trial (SENS Trial)

Palliative Medicine ◽

10.1177/02692163211005340 ◽

2021 ◽

pp. 026921632110053

Author(s):

Steffen Eychmüller ◽

Susanne Zwahlen ◽

Monica C Fliedner ◽

Peter Jüni ◽

Daniel M Aebersold ◽

...

Keyword(s):

Quality Of Life ◽

Palliative Care ◽

Advanced Cancer ◽

Health Related Quality ◽

Early Palliative Care ◽

Care Intervention ◽

Related Quality ◽

Health Related ◽

Oncology Care

Background: International oncology societies recommend early palliative care. Specific models to integrate early palliative care efficiently into clinical practice are debated. The authors designed a study to look at the quantitative and qualitative outcomes of an early palliative care intervention in oncological care to decrease stress and improve quality of life. Aims: To compare a single structured early palliative care intervention added to a usual oncology care in terms of distress and health-related quality of life at baseline compared to 6 months after enrollment. Design: This multicenter randomized controlled trial (NCT01983956) enrolled adult patients with advanced cancer. Participants were either randomly assigned to usual oncology care alone or usual care plus a structured early palliative care intervention. Setting/participants: One hundred fifty adult patients with a variety of advanced cancer diagnoses were randomized. Seventy-four participants were in the intervention and 76 participants in the control group. The primary outcome was the change in patient distress assessed by the National Comprehensive Cancer Network distress thermometer at 6 months. Health-related quality of life, the secondary outcome, was assessed by the Functional Assessment of Cancer Therapy–General Questionnaire. Results: The results showed no significant effect of the early palliative care intervention neither on patient distress nor on health-related quality of life. Conclusion: The addition of an early intervention to usual care for patients with advanced cancer did not improve distress or quality of life. Thus, patients may need more intensive early palliative care with continuous professional support to identify and address their palliative needs early.

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